ks42

I would talk to your doctor about the interaction between codeine and venlafaxine. For myself personally, I use the interactions checker at drugs.com and use the professional data; if anything is listed as at least a "moderate" interaction (and codeine / venlafaxine is listed as moderate, with a warning for health care professionals to monitor patients closely who are on this combo due to respiratory depression, dizziness, and cognitive issues), I don't take it until I talk with my doc. If there's a potential interaction of that magnitude, usually for me, they'll at least start with a super low dose. With POTS making me hypersensitive to the side effects of things anyway, I've found this has helped me avoid some major issues. Don't get me wrong - lots of docs prescribe medication combinations that may be considered "moderate" or even "severe" interactions under certain circumstances and often, patients have no issues. It just depends. That's why I'd strongly suggest talking to your doc. You could also check with a pharmacist - they're usually a wealth of knowledge when it comes to drug interactions.

Also, I forgot to mention - I don't have access to the specific article you posted, to see what they were proposing in order to increase cerebral blood flow (CBF), but one of the key words at the end of the abstract is "Bosentan" (a drug typically used for pulmonary hypertension). A few years ago, a study was done where Bosentan was used to restore CBF in MS patients, so I'm guessing that's probably what your article is proposing too. Here's a link to the older study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3619305/ In MS patients, studies found extremely high levels of endothelin-1 in samples taken from jugular veins, and the hypothesis is that this is what's causing the hypoperfusion in MS. Bosentan is an endothelin-1 antagonist (reduces endothelin-1 levels) and that's why they believe it may be effective. I really don't know if POTS patients would have the same high levels.

Yes, it does make you dizzy, but for me, that's the least problematic of the side effects. I personally am not supposed to take it because I have dysautonomia; codeine is a mild anticholinergic. What that means in simple terms is that it can decrease the activity of the parasympathetic nervous system, and increase a lot of the sympathetic type symptoms POTS people already struggle with - tachycardia, dry mouth, dry eyes, blood pressure fluctuations, and it does slow the transit of food through the GI tract, so as ANCY said, it's definitely contraindicated if you have gastroparesis. If you add caffeine to codeine, you double or triple the anticholinergic effects, so you might have a bigger risk of tachycardia, adrenaline surges, and things like that when you take them both together. I know some people with autonomic dysfunction have no problem with it, so the fact that it's an anticholinergic might not bother you at all. It's impossible to know, since individual cases of dysautonomia and/or POTS are all so different. Also, I don't know what other meds you're on, but codeine interacts pretty seriously with a lot of drugs, especially many of the drugs used to treat POTS, such as beta blockers, certain antihistamines, sedatives like benzodiazepines, etc. so you have to be very careful. Can you talk to a POTS specialist, or at least a doctor familiar with autonomic disorders, about whether codeine would be OK with your particular health issues and medications?

This is a big issue with POTS. According to all three POTS docs I've seen, almost all of their patients have it to some degree. It's also been fairly well documented in the scientific literature; there are studies & articles from Mayo and other major POTS researchers documenting cognitive dysfunction in POTS. Here's one that is freely available; I can see if I can find more later: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3655280/ Also, there are a ton of threads on the forum on this topic as well (some are a little older). It seems like a pretty pervasive symptom that a lot of us suffer with. You might want to do a search for "brain fog" or "cognitive decline" and see what comes up. I pulled up a few of the ones I remembered reading recently: http://forums.dinet.org/index.php?/topic/27162-brain-fog/ http://forums.dinet.org/index.php?/topic/27050-do-you-all-find-that-you-have-trouble-making-decisions/ http://forums.dinet.org/index.php?/topic/26998-effect-of-autonomic-dysfunction-on-your-cognitive-stamina-and-ability/

I looked into this at one point, because I have a family member who actually studies neuroplasticity and its effect on chronic disease. There's initial evidence that it could be really promising for certain things, certain conditions. However, I don't think it's a complete cure in any way - it's just a way to help our brains overcome the stress response that automatically comes with chronic illness. When your brain is stuck in that pattern, it's much more difficult for your body to heal. So neuroplasticity, from my understanding (and keep in mind we're learning new things about it all the time, so this isn't a complete explanation) is helping make new pathways in your brain that are wired for healing instead of stress. It gets your body to stay in "healing mode" as opposed to emergency "OMG I'm sick" fight or flight mode. It has been used really effectively for psychiatric illness. I looked into this program, and I'm wary of it because I do believe the wheelchairtorollerblades blog is just an advertisement. Also, it's being promoted as being able to cure EVERYTHING under the sun, including infectious diseases that we know can evade the immune system (like Lyme). I go by the motto that if something seems to good to be true, it probably is. Also, the cost is super high. In their defense, they do have a six month to one year money back guarantee, although it's anyone's guess if they truly honor that. Biofeedback, meditation, and hypnosis are all methods that can use principles of neuroplasticity, so I'm kind of doing my own neuroplasticity retraining with a combination of the these. I've definitely seen a difference in certain aspects of my illness, although again, it's not a cure (and I never expected it to be one). Also, if you do a search for neuroplasticity on amazon, youtube, and in general, you can find lots of good books, videos, and other resources either for free or much more cheaply that other therapists are successfully using for their patients. That at least might help you get an idea of what neuroplasticity is about, and help you decide if this is something you want to pursue. Hope that helped!

That's an excellent point about blood testing for Celiac's. It's highly inaccurate, so it isn't a good measure of whether you do or do not have it. Did you have blood tests, or a biopsy? If you have biopsies taken from your small intestine (for example, during a colonoscopy) and they're sent to a really good pathology lab, they are MUCH more accurate in diagnosing Celiac's. My one GI specialist actually worked with Celiac's research, so he skipped bloodwork all together and went straight to small intestine biopsies for me (which were, fortunately, negative). In my case, I was told a negative small intestine biopsy should be extremely accurate, as long as I was eating gluten regularly and having symptoms at the time it was taken. And, as I said above, you can have allergies/intolerances without having Celiac's, anyway.

My O2 sats are typically around 97-99%. I've had them drop to around 92-95 when my heart rate dips into the 50's, which makes sense as slower heart rates for certain people may mean slower or less efficient circulation of oxygen. I have always been told low oxygen sats are not a symptom of dysautonomia, but may be a symptom of concurrent or underlying heart, lung, or vascular issues. However, doctors know so little about what is "typical" of dysautonomia that I'm sure it's hard - even for the doctors - to definitively say what is or isn't part of a particular individual's dysautonomia. The cardiologists and pulmonologists I've seen consider anything below 90% worthy of supplemental oxygen, and worthy of a complete heart, lung, and vascular workup (including sleep studies). However, you also have to consider that pulse oximeters don't always give true readings, especially in those of us with perfusion issues in the limbs, chronically cold hands, etc. so it's possible your oxygen could be fine, and your oximeter just can't get a good reading. As someone else mentioned, ABG (arterial blood gas) is really the best measure, when taken in a doctor's office. Hopefully when you take this data to Mayo you'll get some good information. Maybe this thread will help? http://forums.dinet.org/index.php?/topic/23747-blood-oxygen-levels-and-breathing-poll/

Not sure if they'd take the dog away if you were doing better... I actually never thought about that, but it sounds like a valid concern. Also not sure if his training would lapse, either, if you didn't use the dog for service type stuff for awhile. However, I do know that service dogs actually have to be specially handled when they are not acting as service dogs, because they are so intensively trained to serve, that they actually don't know how to just be dogs. When they're not being used, they can get depressed and have other issues. So not sure how that would work for someone who may not need the dog for long stretches of time. Therapy dogs are trained to be almost as well behaved as service dogs out in public - pay attention to their handler, friendly to everyone, are pretty unflappable as far as whatever environment they have to go into, things like that. Anyone with any kind of medical issue - even if it's minor - can have a certified therapy dog, and that applies to both physical and emotional issues - people with PTSD and anxiety can have them, for example. Therapy dogs are allowed in all establishments, just like service dogs. They can ride on the plane with you, go into stores, restaurants, basically everywhere. To get a therapy dog, you'd need to get a dog yourself and either train it yourself or have it trained professionally. The dog then goes through a basic test (it's not hard - it mostly tests basic obedience and temperament), and your doctor has to certify that you have a medical condition necessitating a therapy dog. The dog will then have something he/she can wear in public denoting that it can go everywhere that a service dog can. Outside of the basic therapy dog training, you can still have your dog trained to do additional tasks that you specifically might need - like opening doors, bringing you things when you're in a flare, acting as a support if you get dizzy, things like that.

When I was being seen at Mayo, there was another POTS patient who had a service dog. He was actually able to warn her when her blood pressure was too low to get up, and she'd stay seated or put her feet up. I think he also was able to tell she was going to pass out before she actually did, but I'm not sure. When I was mostly bedridden, and only able to take short, small trips I looked into getting a service dog. I found out I did qualify, but the wait list is super long, it's really expensive, and I honestly didn't think I'd be well enough to do the intensive training they require you to go through when you get the dog. However, depending on where you're located, what kind of help you might get from your doctors, etc., I know there are ways around all of these issues, it just didn't seem like it would work out for me personally. So, I got a puppy with the intention of having it service trained privately (which is nice; as long as you have the right kind of trainer near you, you can do it without worrying about whether you qualify for a service dog). The only downside to this is that you won't know if a dog is suited for service work until he or she is about 6 months old. I took the risk anyway, and even though my dogs (yes, I eventually got a second puppy to keep the first one company) probably are suited to service work, I'm no longer sick enough to need a dog that's 100% service trained (yay!). So, I'm going to have them both therapy certified, so they can go everywhere with me, and am working with a trainer on training them to do certain things that I still need help with.

How was it measuring blood pressure? If it wasn't using a blood pressure cuff, it may not be very accurate. Also, even if it was using a cuff, accuracy varies greatly between the different types and brands of blood pressure cuffs. I was always told automatic or manual upper arm cuffs were the best. Omron does seem to work well.

Have you had ALCAT or allergy testing for wheat or gluten? Celiac's is an inflammatory / autoimmune response of your intestine to the ingestion of gluten, so the testing for that is not the same as the testing for a gluten allergy or intolerance. Also, you can be fine with gluten but react to wheat itself (complicated, I know!). A gluten or wheat allergy is tested for with scratch tests or IgE blood testing, and an intolerance is tested with ALCAT (which is different than allergy testing). Also, are you always noticing it when you eat gluten in the same form? For example, are you reacting specifically to products that contain flour (which would be mostly simple carbohydrates like breads, pastas, cereals, etc) or are you reacting to other products with gluten (like soy sauce, salad dressings, other condiments) as well? There's gluten hidden in a ton of stuff you wouldn't think about. If you're reacting mostly to products with flour, like breads, pastas, and cereals, and you're fine with gluten-containing condiments (and you've completely ruled out Celiac's, wheat or gluten allergies, and intolerance), it's possible it's not the gluten or the wheat. Simple carbs - especially bread, pasta, and cereal - can make POTS and other nervous system disorders much worse. When I first got sick, a bowl of cereal or piece of bread would send me into the biggest flare ever, but it wasn't due to the gluten. It was due to the way our bodies process simple carbs (by quick conversions to sugars, which is irritating to the nervous system and the adrenals). I've been on a diet of no simple carbs - I eat high protein, complex carbs, and no processed foods, and saw a huge difference with that. Of course, I can't tell you if that's really your issue (we're all individual) but it might be something to think about.

Hyperadrenergic POTS can really only be diagnosed with by catecholamine blood testing. They need to pull blood and test your adrenaline / noradrenaline levels while lying down, then have you stand for 10 minutes, take more blood and test them again. If they are significantly high when standing (especially if they are lower while laying down) it may be HyperPOTS, despite what your other test results say. This thread will probably help you, there's a lot of info there: http://forums.dinet.org/index.php?/topic/26969-how-is-hyperadrenergenic-pots-diagnosed/ Also, you might find this other thread interesting too. I've met a few people who had paradoxic parasympathetic syndrome: http://forums.dinet.org/index.php?/topic/25860-pps-not-pots/#entry241243 As far as whether the line about POTS makes it official, it depends. The major POTS researchers (and most autonomic specialists) consider the tilt table test the gold standard for diganosis; meaning, until you've had one, you haven't completely confirmed that you have POTS. Yet other doctors are perfectly happy to definitively diagnose POTS using just a stand test, without a tilt. However, not all docs you go to will accept that as definitive diagnostic criteria, whereas a tilt table test is pretty much universally accepted.

This thread might help you: http://forums.dinet.org/index.php?/topic/27098-cant-get-dr-to-give-iv-fluids-help/ I think someone posted an article there that might be helpful to show your doctors. I also posted a response as well, so I'll try not to repeat that here. But basically, I myself find IV fluids extremely helpful. However, there are very, very serious risks with PICC lines or ports - lethal sepsis (bloodborne) infections are actually common with these types of lines, so I think for most doctors, IV fluids are the last resort, after everything else under the sun has been tried, due to the risks. Some doctors won't prescribe them at all, no matter what. Have you been on the usual blood volume boosting medications, like Florinef? Florinef helps you retain fluids and salt. There are other drugs that can boost your blood volume similar to IVs. Also, have you tried drinking an oral rehydration solution (instead of sports drinks or just increasing salt intake) like Pedialyte? Most doctors won't even consider IV fluids until you've failed oral rehydration solutions, Florinef, and/or other similar drugs. In order to get IV fluids, I first had to try Florinef (which I failed), tried and failed 15 other POTS meds, and had to prove that I was not able to hold on to fluids orally (my urine tests showed really dilute, abnormally large amounts of urine passed, low blood volume on 24 hour urine sodium tests). Also, I'd been ending up in the ER regularly for a year and a half before they decided they'd exhausted all other options, my hydration issues weren't going to go away, and I needed the fluids. And after all that, it was my GP (not my POTS doc) who ordered the fluids

Definitely ask your doctor about the zyrtec and zantac. For one thing, like corina said, we're all very different. I had a severe reaction to mast cell medications that put me in the hospital, and the dose you need will depend on your individual situation (and your mast cell test results), so you'll need to do it under a doctor's supervision. Secondly, you need a doctor to check for interactions with any of the other drugs you're taking. For example, Klonopin and Zyrtec normally shouldn't be taken together - it can be dangerous (I'm not allowed to take Zyrtec, even in baby doses, as long as I'm on Klonopin) and there are various other drug interactions with H1 / H2 blockers you need to be aware of. Also, if you are trying to take them for mast cell activation, just taking those two alone very likely may not work. Typically you would need a mast cell inhibitor, like Cromolyn, which is prescription only, to be taken along with them to be effective.

Do you have HyperPOTS (have you had your catecholamine levels tested) and/or are you hypovolemic? Have you been testing for mast cell activation syndrome? I have the same issue. When I am upright for too long, or am in an overstimulating environment (lights, noise, talking, etc), I have gotten worn out, or my symptoms have become activated for some other reason (like temperature or a combination of all of these things), my body starts to produce excessive amounts of adrenaline. Adrenaline is the catecholamine you produce during a panic attack as well, so what happens is that it basically turns on your body's panic response, even though there's nothing for you to really panic about. That in turn triggers your panic emotions, and everything is just downhill from there. As I've been told by all my POTS docs, most of the time, in POTS, it's not actual panic - it's your body's alarm signal, or warning sign, that something isn't physically right. But your brain reads all the adrenaline as panic, and it triggers a panic attack. We think this happens to me for two reasons. One, I'm hypovolemic, so the longer I'm upright / the more physically stressed I get, the more warning signals (adrenaline) my body sends off to let me know my blood volume is getting dangerously low. The second is because I have HyperPOTS, and producing massive amounts of adrenaline is a hallmark of this disorder, especially when upright (even sitting up with feet on the floor). We also thought I could be having mast cell attacks (often triggered by heat) but I didn't test positive for MCAS. Otherwise, there are several things I do to avoid these situations. First, make sure I'm extremely hydrated & my salt intake is up before I have to go do anything! If I feel any panic type feelings coming on, I drink about 16 oz of water or coconut water at once (yes, I always travel with at least two 16 oz bottles of fluids, even for short doctor appointments)! It tamps down the adrenaline & heart rate response a bit. Eating can help too, especially salty snacks. Second, I actually travel with ice packs in one of those small insulated lunch bags. If I have an attack, I'll put ice on my neck, wrists, or bottom of my feet. Those ice packs go pretty much everywhere with me, as long as there's the slightest risk of being in a warm environment. Three, I always make sure I have a way to immediately get my feet up and recline back. I don't wait until I get full fledged panic - the minute I start feeling off, I make sure I'm reclined with feet up. If I have to ask the front staff if there's a room with a table where I can lie down, I do it. If I have to leave the office and lie down in the car or even the hallway for a few minutes while I drink fluids, apply ice packs, etc. I do that. However, most of the time, I travel with a reclining wheelchair. Whenever I wait somewhere, I recline the wheelchair so I'm basically laying down. It's helped a ton, because then I know I can always lay down whenever I need to. And if the waiting room is too overstimulating, I leave for a few minutes. Learning breathing techniques (meditation, hypnosis, biofeedback) also really helps, but because the cause is primarily physical and not emotional, the breathing doesn't help until I do everything else (hydrate, recline, use ice). Then the deep breathing becomes more effective. So yes. I show up for most events or appointments with a backpack or a really large purse that has my water, salty snacks, and cooler bag with ice packs.

As I mentioned in my post above, labetalol is an alpha blocker / beta blocker combination drug, so it's both.

I agree that drooping eyelids can be a sign of Myasthenia Gravis, although there are many other causes (like Horner's syndrome). I personally had this symptom pretty severely when I first got sick a year and a half ago - I'd get everything you describe (the head pressure, eye pressure, tugging, pulling, and a sensation of drooping slightly). I had a very thorough battery of tests (ophthalmologic, neurologic, and so on) and no cause turned up. My POTS doctors don't think those are necessarily symptoms of the autonomic dysfunction itself, but probably symptoms of the underlying cause (infection or exposure of some sort). Fortunately, these symptoms have gotten a lot better. Now I only get them very rarely, which is really nice, but it took at least six months before they started improving.

When my GERD was really bad, and I was already on PPIs, there were times they had to put me on things that really irritated my GI tract even further (like NSAIDS). What I was able to do was take something like liquid Maalox (which is over the counter) with the medication that irritated my stomach (similar to the effect you get from taking it with milk, in my opinion). Of course, I would always say ask your doc before trying new meds even if they're OTC

There are two branches of the nervous system: the sympathetic, which controls "fight or flight" and produces catecholamines adrenaline and noradrenaline, and the parasympathetic, responsible for resting and calming the body. Normally, these two work in balance. In dysautonomia, to put it simply, they are thought to be unbalanced, and you get a lot of inappropriate overactivity of the sympathetic nervous system. Meaning, her body may be going into "fight or flight" even when there's nothing provoking her, because of the dysautonomia. There are various theories as to why that happens - might be a compensatory mechanism, whereby the body is trying as hard as it can to push blood back up to the brain, a way that the body regulates unstable blood pressures that are fluctuating too much, or it may be sending off warning signals that the blood volume is too low (many POTS patients are hypovolemic). Either way, she may not have true anxiety; it may be, like p8d said, adrenaline surging through, which is common. Getting a handle on blood volume and getting the POTS under control can help reduce that.

Technically, for a biopsy (assuming it is a standard small fiber nerve biopsy), the injection is superficial (localized to the skin) and shouldn't go into the bloodstream. And for SFN biopsies, it's typically a one-injection deal. So, your chances of having any of the epi actually affect you are probably extremely rare. That said, many POTS patients react horribly to anesthetics with epinephrine even in miniscule amounts. When I had my catecholamine levels tested, my epinephrine levels (adrenaline) were three times the upper limit of normal at rest, so even teeny tiny bits of epi that make it into my system cause severe reactions - hypertensive crises, severe tachycardia, adrenergic storms. I even react to topical agents that contain epi, which is almost unheard of. So, when I had my small fiber nerve biopsy done, they used anesthetic without epi. Because they only take about a 3mm patch of skin (punch biopsy), I still only needed one injection and didn't feel anything. They said the only reason for epi in this particular case was vasoconstriction to stop the bleeding a little quicker; because it's so superficial, the presence of epi in the injection really doesn't make a huge difference as far as how numb you get (although ordinarily it does). And to be honest, I didn't bleed much. My spouse, who actually did have epi, bled more than I did, lol.

Thanks everyone! Yeah, it's frustrating, and thanks for letting me vent. Although I do have to say, I feel lucky that I don't encounter docs like him more often. I really feel for those of us who have to deal with docs like this on a regular basis! Katybug - I had the same thought. I do wonder why he became a toxicologist, he seems dismissive of so much that, like you said, has been a part of mainstream medicine for awhile!

Robstahlobstah - no, sodium blood test won't tell you if you are hypovolemic. Detecting hypovolemia is actually really tricky, as your blood tests will usually be normal.

I was given Florinef as one of the first medications to try by a Mayo POTS specialist, even though I was having blood pressure as high as 160/110 (sometimes a lot higher) regularly at the time. The rationale was that a lot of POTS patients' blood pressures spike due to blood volume instability. When you stabilize blood volume with something like Florinef, blood pressure will go up in people who have low BP, and will come down in people who have high BP. At least, that's the way it was explained to me by one doc. Other docs may have other opinions, as I don't really believe it's an exact science as of yet.. just a lot of guesswork! What we did, though, to make sure nothing weird happened with my BP, was start with 1/4 of a 0.1mg pill. Took that for a week. Then, took half a pill for a week, then 3/4 of a pill for a week, until finally the whole pill. Kept an eye on blood pressures the whole time. If you're worried about it, ask your doc if you can start with a super low dose like that and taper up. Keep an eye on your blood pressure (take a daily reading) while you're tapering up.

So to explain about addiction / dependence... Klonopin is a narcotic sedative with anti-seizure and muscle relaxant properties. When you take it for long periods (say, daily for a couple of months) your body becomes dependent on the chemicals it's causing your brain to produce. It causes your brain to "forget" how to produce those chemicals on its own. So if you stop suddenly, you will not only feel awful, but will create a potentially dangerous situation where your brain isn't producing some of the necessary chemicals it needs to regulate certain things. Seizures are common in people who stop Klonopin suddenly after taking it long term, and sometimes some of the sudden withdrawal effects can be life threatening. Tapering off slowly re-trains your brain to produce these chemicals again, which is much safer. Addiction is actually different than dependence. Klonopin causes dependence in 100% of cases when taken long term; however, when you're dependent on it, your body needs it to function, but you don't crave it or feel you need to take it to produce a high. Addiction typically results from recreational use, and comes along with cravings for higher and higher doses to continue to feel "high". People who take Klonopin for medical reasons won't always get addicted, especially if they don't feel high while on it, and don't use it recreationally. Yeah, I've been told by a couple of naturopaths and psychiatrists that GABA pills don't work as they do need to cross the blood brain barrier to have any effect, and they never worked for me personally.

It's tough. Klonopin was actually originally developed as an anti-seizure medication and was designed for long term use. Now, it's used more for anxiety, and because of the stigma surrounding benzodiazepines, it's been designated more for short term use. Benzodiazepines are narcotics, which are very often abused recreationally (like opiates), and doctors are taught to avoid prescribing them, especially long term. Because one of their primary uses is anxiety, doctors are also generally taught that antidepressants are good equivalent alternatives (which they would be, if all you were dealing with was anxiety). I've been on Klonopin for 1.5 years, taken every day. I've tried 15 other medications for chest pain, pressure, and the elevated catecholamines that come along with HyperPOTS, and Klonopin hands down is the one that works the best. You name it, I've tried it - calcium channel blockers, beta blockers, antidepressants, gabapentin, lyrica, and so on. The gabapentin class worked in conjunction with Klonopin, but not alone. Without the Klonopin, I'd be bed-bound, and would probably be in the hospital every other day. So it's made a HUGE difference in my quality of life. Yes, it causes dependency, so it is DEFINITELY not right for everyone!! Stopping immediately can cause serious side effects such as seizures. But there are taper schedules that can be used to reduce dosages (10% a week or every two weeks) and I've successfully gone on and off benzos using this schedule with absolutely no withdrawal issues whatsoever (although not everyone has that experience). And to be honest, antidepressants cause dependency as well, and can't be stopped suddenly without serious side effects either (they just aren't abused recreationally, so are deemed safer). Unfortunately, many doctors aren't educated on the benefits of long term use or how to safely withdraw patients from these drugs anymore, because of the risk of recreational abuse and addiction. What I had to do was start seeing a psychiatrist regularly, who advocated for my Klonopin use, because they are typically more familiar with (and more willing to prescribe) drugs from this class long term for various medical issues. They're also more familiar with safe tapering & withdrawal.